Through a relationship with Children’s Specialized Hospital, the Center for Discovery, Innovation and Development has been able to participate in a number of projects that will improve the lives of children, adolescents and young adults with special healthcare needs, and their families.
Community Outreach and Resources Related to Autism Spectrum Disorder
- This digital platform provides emergency information resources for individuals with autism spectrum disorder (ASD), their families, and first responders. Resources include the Autism Family Safety Book, 911 Means Emergency guide for people with ASD, 911 Means Emergency Guide for first responders and emergency dispatchers. This program is part of the Kohl’s Autism Awareness Program at Children’s Specialized Hospital funded in part through the generosity of Kohl’s Cares. Learn more here.
Friends like you. Friends like me.
- Friends like you. Friends like me. is an educational community outreach initiative designed to help educate children about ASD and provide the tools necessary to facilitate friendships among children. This program encourages recognition of children’s similarities, reinforces the common desire to be accepted and have friends, demystifies autism in an age-appropriate manner, and promotes inclusion, respect, and friendship between children of all abilities in all facets of their lives. This program is part of the Kohl’s Autism Awareness Program at Children’s Specialized Hospital funded in part through the generosity of Kohl’s Cares. Learn more here.
Make Friends with Autism
- This is an educational community outreach initiative to provide resources to businesses, people with ASD, families and others in the community regarding ways that businesses can be welcoming and inclusive for people with special needs. This program is part of the Kohl’s Autism Awareness Program at Children’s Specialized Hospital funded in part through the generosity of Kohl’s Cares. Learn more here.
- The Healthier Me app is an innovative approach to meeting an unmet need – helping youth with ASD learn and practice safe and healthy activities as a regular part of their lives. It can be used in multiple environments on an iPhone by the person with ASD and/or their various care providers to encourage good health, nutrition, fitness and safety. Ongoing research will examine the impact of app use on health and safety practices. This program is part of the Kohl’s Autism Awareness Program at Children’s Specialized Hospital funded in part through the generosity of Kohl’s Cares. Learn more here.
Kohl’s Autism Awareness Community Hub
- This centralized source of resources builds awareness and understanding for people living with autism and service providers. The Community Hub provides multimedia practical resources to enhance function and quality of life, increase safety, and improve the effectiveness of community services. By using the Community Hub, individuals with autism, family members, professionals, service providers, and other members of the community can feel more comfortable during common daily activities at home, school, and other community settings. This program is part of the Kohl’s Autism Awareness Program at Children’s Specialized Hospital funded in part through the generosity of Kohl’s Cares. Click here to learn more.
Improving Primary Care within a Medical Home Model
Medical Home Model for Children with ASD
- Partially funded by a grant from the NJ Governor’s Council on Medical Research and Treatment of Autism, services from the Special Needs Primary Care at Children’s Specialized Hospital were expanded by creating an optimal care bundle to promote improved access to and quality of care. A second grant from the Governor’s Council helped fund the development of resources for families, community pediatricians and adult primary care providers to foster transition to adult healthcare for adolescents and young adults with ASD or other disorders.
Reducing Disparities in Accessing Care for Young Children at Developmental Risk
Quick Peek Program (Community Based Developmental Screenings)
- Free, community-based, bilingual developmental screenings, sponsored by Kohl’s Cares, are provided for children ages 1 to 5 years. These screening clinics take place primarily within under-served communities in easily accessible locations such as libraries, community centers, or preschools. Read more here.
Feasibility of ASD Screenings in Child Care Setting
- Known racial, ethnic, language and income disparities exist in access to developmental and ASD screening, diagnosis and care. In order to improve access to early ASD screening, this grant focused on determining the feasibility of conducting screening within child care settings. This grant was partially funded by the NJ Governor’s Council on Medical Research and Treatment of Autism. Read more here.
Research on Implementing Developmental Screenings in Child Care Settings
- CSH has partnered with The Rutgers Graduate School of Applied and Professional Psychology (GSAPP) to study barriers and incentives for implementation of developmental screening programs in child care settings. The goal is to determine potential interventions geared towards increasing the number of children screened, evaluating the comfort and skill of child care providers to discuss concerns with parents, and developing strategies to meet the behavioral and developmental needs of children at developmental risk who attend child care.
Development of a New Autism Screening Tool for Traditionally Underserved Families
- The goal of this research is to test strategies that decrease the age at which traditionally underserved children with ASD in New Jersey are identified and enter treatment. With funding from the NJ Governor’s Council on Medical Research and Treatment of Autism, CSH developed a primarily visually based autism screening tool designed to minimize literacy demands for respondents. The tool, the Developmental Check-In (DCI), effectively discriminates ASD from non-ASD among young children from low income, racial or ethnic minority or limited English proficiency families. Read more here.
Training Child Care Providers on Developmental Screenings
- CSH developed curricula to train child care workers on how to conduct developmental screenings within their centers. The first several trainings were funded by Kohl’s Department Stores, but subsequent funding has been provided by NJ Department of Children and Families and Grow NJ Kids. Trainings are provided in both English and Spanish, focus on the use of the Ages and Stages Questionnaire (ASQ) and include review of how to discuss developmental concerns with families.
Exploring the Experiences of Diverse Families of Children Newly Diagnosed with Autism Spectrum Disorder (ASD) in New Jersey
- In collaboration with The Boggs Center on Developmental Disabilities, this project focuses on the reported experiences of parents of young Latino children recently diagnosed with ASD and implications for families, healthcare providers and other service providers and communities. This research employing qualitative interview was partially funded by the NJ Governor’s Council for Medical Research and Treatment of Autism.
Parents Preferences and Expectations for Developmental Evaluations
- This project focused on understanding parent preferences and expectations when they make an appointment for an initial developmental pediatric evaluation. The goal of this project was to inform design of care models that improve access to needed evaluations.
Developmental Pediatrics Wait List: A National Estimate
- This project involved a mystery shopper study to (1) identify national average wait-times for developmental pediatric evaluations and (2) identify differences based on whether an appointment was requested in English or Spanish. Read more here.
Assuring Patient-Centered Literacy Promotion for Underserved Children (A PLUS) to Promote School Readiness
- This is a project supported by Robert Wood Johnson Foundation that develops and tests a video and text messaging intervention to enhance Reach Out and Read and encourages shared reading between parents and young children.
Understanding Barriers to Literacy Promotion in Primary Care
- In this project, a random sample of NJ primary care pediatricians was surveyed with the goal of improving understanding of barriers to implementation of the recent American Academy of Pediatrics guidelines on literacy promotion in primary care. Read more here.
Resident Training on Literacy Promotion
- In this project, qualitative interviews with NJ program directors are conducted regarding literacy promotion training in pediatric residency.
Promoting School Readiness through Developmental Monitoring and Language Promotion
- This project involves pilot testing an intervention plan that encourages parents to both monitor their child’s development and promote development through activities such as daily reading. This is funded in part by the Community-University Research Partnership (CURP).
Quality of Life among Children with Special Health Care Needs
Quality of Life and Medical Complexity in Pediatric Patients
- The purpose of this study is to assess the relationship between health related quality of life (HRQoL) and medical complexity in children with special healthcare needs in the primary care setting.
Exploring Pediatric Quality of Life Scores in Children with Autism
- This is a descriptive study examining the baseline quality of life of children with an ASD diagnosis served at Children’s Specialized Hospital.
Adverse Childhood Experiences and Child Developmental and Behavioral Outcomes
- A series of studies was conducted utilizing data from the Fragile Families and Child Wellbeing Study. These studies sought to add insight into the underlying mechanisms linking adverse childhood experiences and developmental and behavioral problems in children. Read more here.
Efficacy and Cost-Effectiveness of Pharmacogenomics Testing for Informing Medication
- CSH is collaborating in a joint clinical research study with the Clinical and Translational Genome Research Institute (CTGRI). The study aims to determine if pharmacogenomics (PGx) testing of pediatric patients will help pediatricians improve the way they choose which ADHD medication should be prescribed to a child and at which dose the medication would best help that child. The goals are to reduce the time to stable symptom relief through optimal medication and dosing; reduce the incident and severity of adverse drug reactions; reduce emotional stress on patients and their families; improve patient compliance for prescribed drug therapy; and reduce the cost of providing quality care.
Training in Developmental Disabilities
Evaluation of Seminar on Family Centered Care and Developmental Disabilities
- This focuses on content analysis of medical student evaluations from 2009 to 2016 of a family faculty partnership that trains medical students on family centered care and developmental disabilities.
Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
- CSH partnered with The Boggs Center on Developmental Disabilities - NJ LEND to provide experiential and didactic training to graduate level and allied health fellows. The goal is to expand the pool of professionals trained to provide high-quality, interdisciplinary, family-centered, culturally competent care that addresses the complex needs of children with autism, related disabilities and other maternal and child health populations. The NJ LEND is funded by a grant to The Boggs Center from the Maternal and Child Health Bureau and Health Resources and Services Administration (HRSA).
Advances in Medical Technology
TrachAlarm: A new approach to monitor patients with tracheostomies
- In collaboration with RWJBarnabas Health and Stevens Institute of Technology, this project involves the development of an adaptor that would fit over the standard tracheostomy tube to continuously measure air flow and alarm when there is a significant reduction in flow with the goal of improved patient care.